|Authors||Neuman HB, Robbins L, Duarte J, Charlson ME, Weiser MR, Guillem JG, Wong WD, Temple LK|
|Journal||J Surg Oncol Volume: 101 Issue: 7 Pages: 570-6|
|Publish Date||2010 Jun 01|
Although primary therapy in familial adenomatous polyposis (FAP) is surgical, little is known about patients’ surgical decision-making experience. The objective was to explore the decision-making process surrounding risk-reducing surgery in FAP using qualitative methodology.In-depth, semi-structured interviews with 14 FAP patients and 11 healthcare providers with experience caring for FAP patients were conducted. Using grounded theory, line-by-line content analysis identified categories from which themes describing patients’ experiences emerged; analysis continued until data saturation.Median age at surgery was 23 (7-37) years; at interview 41 (19-74) years. Two patients underwent surgery secondary to cancer, the remainder for risk-reduction. Content experts included colorectal surgeons (3), geneticists (2), gastroenterologists (3), nurses (3).Three themes emerged: Information: Family was the primary information source, and patients’ level of information varied. The importance of up-front information was emphasized. Influences on decision-making: Influential factors included family experiences, youth, emotional state, support, and decision-making role. Although patients often sought opinions, most (12/14) wanted an active/shared role in decision-making. Life after surgery: Patients described surgery as the “easy part,” emphasizing the need for long-term relationships with care providers.Decisions surrounding risk-reducing surgery in FAP are unique. A decision support tool may facilitate decision-making, better preparing patients for life after surgery.